Methotrexate help please

[Justonedayatatime11]

Due to start this on Monday and all I can find and hear about is horror stories. Starting on 15mg tablets, anyone got any advice or experience that isn't going to scare me anymore than I already am?

[Scarby9]

It has been a game changer for my dad with his rheumatoid arthritis. Also my brother. And a friend's mother.
They all have regular blood tests and checks but the benefits absolutely outweigh the possible side effects for them.

[BrilloPaddy]

My Dad takes it. He didn't tolerate the tablets very well, so he uses an injection pen once a week, and takes folic acid on the other 6 days a week. It's made a huge difference to him....... before he went on it, he could barely move his fingers, thumbs and wrists as they were so swollen. I think it took around 3 months for them to get the dosage right, but he was very carefully monitored during this time. He's an insulin dependent diabetic so the injection pen doesn't bother him remotely.

I'd say the Methotrexate gives him a much better quality of life, and his kidney/liver function has been fine the time he's been on it (about 2 years).

[CorpusCallosum]

DH has been on it for years on and off. Regular checks of liver and kidney function and all have remained fine despite the occasional, and sometimes more than occasional beer.

He tries to keep on it as it's meant to keep his biologic (which is actually managing the autoimmune condition really well) working long term, but he does worry about the side effects so has a self-prescribed break when he feels like it.

[Horseshoe5]

It's good for pain but tablets caused nausea for me. Injection was better

[luminosity]

It’s fine. I have taken it for 15 years. No problems at all.

[Sidge]

I started on the tablets - changed my life (I have RA).

Then they gave me side effects so I was switched to the injection and it’s much better. I’m also on a biologic.

[MiaMarshmallows]

Know a few on this at the same dose. One absolutely fine, the other just gets really tired when taking it. Please don't scare yourself. Remember it helps many people.

[Justonedayatatime11]

Thanks, this is so reassuring! I only seem to hear horror stories!

[Wolfiefan]

I’m on it for severe eczema. It’s been a life saver for me.

[longtompot]

My yd was on the tablets when she was first on mtx. It really hurt her stomach and it would swell up and be rock hard. She then went onto the injections and so much better. However, probably due to her age, she struggled mentally on it. It made her very sick, so she would have a rubbish week at school and then have a weekend of feeling very sick. She took the folic acid, though it was only on the day before, and she had some stomach protectors, but not sure if they helped much of at all.
At the start it really did help her (she had JIA) but she then had to have Humira as well towards the end of her time on it.
She is now in biologics which sadly aren't helping as much as she hoped. The drs have said she's pretty much tried everything :(

All that said, it really is worth a try as when it works it really does help a lot of people. I know people who have had real success with it.

[longtompot]

@Sidge what biological are you on? My yd is on Rimvoq

[Sidge]

@longtompot I’m on adalimumab - was Humira but now on the cheaper Imraldi.

[longtompot]

@Sidge ah, she's tried those. It's funny how many different names each medication has. You think you've discovered a new one, only to find it's an alt name. Thank you anyway.

[squashyhat]

I have been on it for RA for many years. Currently 25mg per week. Apart from the annoyance of taking 10 tablets in one go it's fine. Definitely has the disease under control and regular blood tests for liver function always come back clear, despite me probably drinking more wine than I should.

[WorryMcGee]

My dad has taken it for RA for many years. He has been fine, even though he drinks far far FAR more than he should :-( we often wonder how much more good it would do if he didn’t drink!

[Justonedayatatime11]

I think my biggest concern is the sickness it seems to go hand in hand with. I hate being sick. That's what's putting me off taking my first dose

[Wolfiefan]

Never ever felt sick on it.

[topcat2014]

15mg weekly for years for eczema with no effects

[Firesidefox]

My father takes it for a rash that wouldn't go away and it's changed his life.

[CorpusCallosum]

DH has never been sick with it. Good luck 🍀

[anotheronenow]

I could have written the OP's post myself. I was told by the rheumatologist to add methotrexate to the plaquinil I have been taking since diagnosed with super high anti-CCP levels in May. And also diagnosed with Sjogren's syndrome by lip biopsy. However, I have only mild RA symptoms and no damage on x-rays - and when I do get pains in my hands and fingers they are bad for a few days and then ok for a few days.

I must have been doing the same reading about methotrexate as you OP and things like your hair falling out (mine's already a bit thinning on plaquinil) and worse... so I have been avoiding it so far.

Also I have surgery scheduled for an ovarian cyst in December and the surgeon told me not to be on it during surgery (slow healing), so I thought I would start in January. But last time I saw the rheumatologist he said I was just storing up damage for the future - likened my high blood levels of Rh and anti-CCPs to a speeding train and told me I am in a poor prognosis group. Not very cheerful.

Good luck OP on Monday. Can you update?

THANK YOU so very much to the PP's who have come on and been reassuring!!

Any Sjogren's peeps around who've taken/are taking it? Guess I should start my own thread one of these days.

[Justonedayatatime11]

@anotheronenow I'm sitting her wondering if I should put it off until after half term week. But then am I just going to find another excuse not to take it then?

[Lily999888]

I’ve been on 20mg for 6 years now and definitely improved my quality of life hugely. The amount of folic acid you take can help if you feel sick after taking it. I currently take folic acid three times a week, but not on the same day as methotrexate. Your rheumatology dept should help sort out the best folic acid dose for you.

[Silverjellybean71]

I’ve just started on 10mg today. Took it at teatime, feel fine but just got into bed and my face is really hot and red - like that just before sunburnt feeling. But no nausea, which is good

[chillied]

I take methotrexate to keep lupus at bay.

No side effects at all. Never feel sick.

I've been told it is slow acting - benefits start to kick in after taking it for about 3 months. So no reason to delay for a week.

My consultant is very stern about not drinking - I never drink alcohol!